u/oh8oh8eighty8

Obviously I know you can't give medical advice but wondering about what other people are taking for MCAS. I was prescribed three different medications last week and am a bit confused about them (see rants below... this medical office/doctor was a nightmare)

I was prescribed:

Zafirlukast

upping H1/H2 up to 4 times daily

Ketotifen

Cromolyn

QUESTIONS:
-I believe he said to start the Zafirlukast right away. Does anyone take this just for systemic inflammation? My breathing issues and flushing are almost non-existant, definitely not a concern of mine. I am dealing with long covid (the me/cfs, pots, mcas type) and the biggest issues are severe fatigue and lots of headaches / migraines.

-He said to hold off on taking the Ketotifen and Cromolyn "until I need them" or something - I tried asking for a bit more clarity, but still confused. He kind of mumbled something to the effect "you don't want to be on these long term" or something.... wasn't sure if he was implying that I personally don't want to be on medications forever or that it actually wasn't safe. My god, sorry this doctor was a nightmare (nice guy, but...).

-The Cromolyn and Ketotifen are both compounded, correct? this doctor didn't seem to know to send these to a different pharmacy... the nurse had to come in to send to Ketotifen to a special pharmacy, but somehow the cromolyn was sent but "cancelled" by my pharamacy..

-Anyone know of anyone else that would be willing to manage MCAS / prescribe these medications in Minnesota? Or anywhere else to get these? These doctor's are a rare breed. I learned once I got to the appt that I can't even see this doctor for a follow-up (nor do I really want to) since they can't bill Medicare / Medicaid and this is what I'm switching to as of this month.

I know I could call the medical office.... but holy crap this recent doctor's appt was 2 hours long (which was exhausting) and the doctor was so confusing (I have plenty of basic medical understanding- so it wasn't the actual medical information that was confusing). The instructions he gave were a nightmare (and he didn't write down any instructions) and the whole medical office was dysfunctional so I don't really want to call them right now.

Thank you!

I have the me/cfs, POTS, MCAS flavor of long covid (been over 3.5 years). I also learned a couple years ago that I was exposed to toxic mold probably starting the year before I got sick and finally was able to move out of infested apartment about 14 months ago...

I have had more vivid dreams lately which makes me wonder if I'm actually starting to heal. I've also been more tired than usual which could potentially be a sign of recovery. The body has to use up energy to repair itself is my thought there. Anyways, just wondering if anyone else has experienced a similar phenomenon.

Needing serious support with diet.

I have the me/cfs, pots, mcas flavor of long covid (and mold toxicity). It's been over 3.5 years and I have reached a serious burnout recently. I'm so tired. I'm not bed bound but you bet I'm lying down for most of the day. I know all the things when it comes to diet, the challenge is actually getting the motivation to cook consistently when I'm THIS tired and also I get weird food aversions and get so sick of eating the same thing everyday. Also I can keep a food journal but looking back at it and putting everything together is hard. I have ADHD and autism and past history of an eating disorder which makes everything a bit more difficult (iykyk). I think working with someone could help me immensely.

Anyone know of a health/nutrition coach that seriously knows about these health conditions? Or any other suggestions? I would like to work with someone who understands that every body has different needs and that there isn't one diet that will work for everyone with a certain health condition - someone who thinks holistically (I would hope that anyone specializing in mcas would deeply understand that already).

I have recently hired a movement coach and this has been super helpful - I have someone to keep track of everything for me and when I have someone make a schedule for me I actually seem to follow it, so I'm hoping I can have success working with a nutrition coach.

Thank you!!

This morning my boyfriend asked if he could have a friend over tonight to watch a movie. Usually I’d be totally fine with that, but right now I just… can’t.

I’m AuDHD and deal with pretty severe health issues including chronic fatigue and POTS, and lately I’ve been completely wiped out. The past few weeks have felt like total burnout, especially after a disability hearing and a few other stressful things. I’m so exhausted that I haven’t even washed my hair in close to two weeks.

Last night didn’t help either—I was up until 2am because we watched a movie that ended up being way more emotionally intense than I expected, and I just feel wrecked today.

So when he asked about having someone over, I immediately got stressed and said no. Our house is a mess, I feel awful physically, and having someone here would throw me out of my routine. I'll likely have another super late night because it takes me forever to wind down after my normal routine is altered and make it hard to feel comfortable in my own space. Even though I really like his friend, I don’t have the energy to interact, and I’d feel like I have to at least a little if they’re here since I'm either going to be stuck upstairs without access to the kitchen or will need to walk through the living room (where they'll be) to get to the kitchen.

Now I just feel bad because my boyfriend is upset- he feels like I don't understand how he feels (I do- I'm an empath), and I definitely feel like he doesn't understand how I feel. No one can really understand the feel of total burnout and daily exhaustion from chronic health issues unless they've experienced it unfortunately- which is why I'm here hoping to get some sort of understanding and just need to get this icky feeling off my chest. I'm not being the a-hole, right?

Hope this makes sense - I'm so tired and the brain fog is thick. Thanks for taking the time to read this.

EDIT: just wanting to add that my boyfriend is going to be going over to his friend's house tonight to watch the movie thankfully!! I forgot to add that his friend had two younger children which makes movie watching challenging at his house which is why this was more of an issue. thankfully my boyfriend is a great human and was initially upset, understandably so, but overall is understanding of the situation now that we've had some time to decompress! Thanks for everyone's input.